Skip to main content

Let's help Janet get a new pair of lungs!

Janet Perez is an HPS'er that lives in the Chicago area. Some of you may know her from the HPS adults listserv. She was diagnosed with Hermansky-Pudlak Syndrome rather late having, unfortunately, never heard of it or it's potential complications. By the time we met Janet, it was too late for her to participate in the research at NIH. She is currently listed as critical on the lung transplant list and has already had one "trial run" for a new set of lungs.

Lung transplants aren't easy, and they aren't cheap. Janet and her family are raising money to help with expenses not covered by insurance. I have added a widget to the side of this page for her online fundraiser. As you can see, it does cut off a bit, like some of my other items on the side of the page - yet no matter what I do in the HTML code to fix the size, this keeps happening. I don't want to delay getting Janet's information up while I figure it out.

I've never actually met Janet, but we've talked on the phone many times. I can hardly wait to meet her in person. She has such a great sense of humor. I never talk to her where she doesn't make me laugh. Janet has always been a very active person and it's so frustrating for her now to be tied to oxygen and feel so tired at the most basic of tasks. She can hardly wait to get her new lungs.

You can also check out Janet's Web page at: http://www.janetsfundraiser.com. Every little bit helps!

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria